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Toward a National Strategy for Long-Term Care of the Elderly: A Study Plan (1986)

Chapter: Exhibit D: Planning Study Material

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Suggested Citation:"Exhibit D: Planning Study Material." Institute of Medicine. 1986. Toward a National Strategy for Long-Term Care of the Elderly: A Study Plan. Washington, DC: The National Academies Press. doi: 10.17226/9922.
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Suggested Citation:"Exhibit D: Planning Study Material." Institute of Medicine. 1986. Toward a National Strategy for Long-Term Care of the Elderly: A Study Plan. Washington, DC: The National Academies Press. doi: 10.17226/9922.
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Suggested Citation:"Exhibit D: Planning Study Material." Institute of Medicine. 1986. Toward a National Strategy for Long-Term Care of the Elderly: A Study Plan. Washington, DC: The National Academies Press. doi: 10.17226/9922.
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Suggested Citation:"Exhibit D: Planning Study Material." Institute of Medicine. 1986. Toward a National Strategy for Long-Term Care of the Elderly: A Study Plan. Washington, DC: The National Academies Press. doi: 10.17226/9922.
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Suggested Citation:"Exhibit D: Planning Study Material." Institute of Medicine. 1986. Toward a National Strategy for Long-Term Care of the Elderly: A Study Plan. Washington, DC: The National Academies Press. doi: 10.17226/9922.
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Suggested Citation:"Exhibit D: Planning Study Material." Institute of Medicine. 1986. Toward a National Strategy for Long-Term Care of the Elderly: A Study Plan. Washington, DC: The National Academies Press. doi: 10.17226/9922.
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Suggested Citation:"Exhibit D: Planning Study Material." Institute of Medicine. 1986. Toward a National Strategy for Long-Term Care of the Elderly: A Study Plan. Washington, DC: The National Academies Press. doi: 10.17226/9922.
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Page 153
Suggested Citation:"Exhibit D: Planning Study Material." Institute of Medicine. 1986. Toward a National Strategy for Long-Term Care of the Elderly: A Study Plan. Washington, DC: The National Academies Press. doi: 10.17226/9922.
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Page 154
Suggested Citation:"Exhibit D: Planning Study Material." Institute of Medicine. 1986. Toward a National Strategy for Long-Term Care of the Elderly: A Study Plan. Washington, DC: The National Academies Press. doi: 10.17226/9922.
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Page 155
Suggested Citation:"Exhibit D: Planning Study Material." Institute of Medicine. 1986. Toward a National Strategy for Long-Term Care of the Elderly: A Study Plan. Washington, DC: The National Academies Press. doi: 10.17226/9922.
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Page 156
Suggested Citation:"Exhibit D: Planning Study Material." Institute of Medicine. 1986. Toward a National Strategy for Long-Term Care of the Elderly: A Study Plan. Washington, DC: The National Academies Press. doi: 10.17226/9922.
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Page 157
Suggested Citation:"Exhibit D: Planning Study Material." Institute of Medicine. 1986. Toward a National Strategy for Long-Term Care of the Elderly: A Study Plan. Washington, DC: The National Academies Press. doi: 10.17226/9922.
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Page 158
Suggested Citation:"Exhibit D: Planning Study Material." Institute of Medicine. 1986. Toward a National Strategy for Long-Term Care of the Elderly: A Study Plan. Washington, DC: The National Academies Press. doi: 10.17226/9922.
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Page 159
Suggested Citation:"Exhibit D: Planning Study Material." Institute of Medicine. 1986. Toward a National Strategy for Long-Term Care of the Elderly: A Study Plan. Washington, DC: The National Academies Press. doi: 10.17226/9922.
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Page 160
Suggested Citation:"Exhibit D: Planning Study Material." Institute of Medicine. 1986. Toward a National Strategy for Long-Term Care of the Elderly: A Study Plan. Washington, DC: The National Academies Press. doi: 10.17226/9922.
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Page 161
Suggested Citation:"Exhibit D: Planning Study Material." Institute of Medicine. 1986. Toward a National Strategy for Long-Term Care of the Elderly: A Study Plan. Washington, DC: The National Academies Press. doi: 10.17226/9922.
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Page 162
Suggested Citation:"Exhibit D: Planning Study Material." Institute of Medicine. 1986. Toward a National Strategy for Long-Term Care of the Elderly: A Study Plan. Washington, DC: The National Academies Press. doi: 10.17226/9922.
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Page 163
Suggested Citation:"Exhibit D: Planning Study Material." Institute of Medicine. 1986. Toward a National Strategy for Long-Term Care of the Elderly: A Study Plan. Washington, DC: The National Academies Press. doi: 10.17226/9922.
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Suggested Citation:"Exhibit D: Planning Study Material." Institute of Medicine. 1986. Toward a National Strategy for Long-Term Care of the Elderly: A Study Plan. Washington, DC: The National Academies Press. doi: 10.17226/9922.
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Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

EXHIBIT D-1 CRITICAL LONG-TERM CARE ISSUES FROM PERSPECTIVE OF INVOLVED PRIVATE SECTOR ORGANIZATIONS Daniel C. Zwick Consultant Analysis of Comments Provided to Planning Committee Eighty letters were received in response to Institute of Medicine President Frederick C. Robbins' letter of January 25, 1985 requesting involved private organizations "to define . . . the two or three issues that your organization believes . . . to be the most critical for long-term care through the 1990s" that should be considered for inclusion in the major study being planned by the Institute. Most respondents indicated substantial interest and expressed their support for the undertaking of such a study. Many commended the Institute for taking leadership in this complex field and indicated collaborate during the study on a continuing basis. Almost 60 percent of the organizations to whom the request was sent forwarded comments soon enough to be included in this analysis (Table 1~. The highest rates of responses were from business groups, disease-oriented voluntary agencies and professional associations; the response rate for these three groups exceeded 70 percent. The organizations to whom letters were sent and from whom responses were received are listed in Attachment 1. The lowest rates of response were from consumer groups and provider groups. The low rate among consumer groups - 26 percent - is consistent with other experiences; these agencies tend to have very limited staffs who have the time or training to handle survey questions. The relatively low response rate among provider groups is probably due to a similar explanation; many of the smaller national associations of this type have only modest staffing. The largest number of responses - about 40 percent of the total - were from professional associations (Table 2~. Disease-oriented voluntary associations make up the second largest group of respondents - over 20 percent. Provider groups are third - about 15 percent. Altogether, these three categories account for about three-quarters of the responses. Public officials groups and consumer groups compose over half the remainder. - . . ~ . ~ ~ @ a wllllngness to Nineteen issues of substantial concern were identified in analyzing the responses (Table 3~; several are overlapping. The findings are discussed in the subsequent sections of this paper. -147-

TABLE 1 Responses to Letter of January 25, 1985 Type of Organization No. Letters No. Responses Percent Professional Associations 43 30 - 70 Provider Groups 25 11 44 Disease-Oriented Associations 24 17 71 Consumer Organizations 19 Public Officials Groups 11 5 7 26 64 Educational Groups 4 2 50 Business Groups 3 3 100 Other ~ 5 62 Total 137 80 58 -148-

TABLE ~ Distribution of Responses Type of Organization Professional Associations 30 No. Responses Percent . . . . . . . . 38 Provider Groups 11 14 Disease-Oriented Associations 17 -21 Consumer Organizations 5 6 Public Officials Groups 7 Educational Groups Business Groups Other 2 9 3 4 Total 80 100 -149-

TABLE 3 Frequency and Intensity of Comments Issue No. Comments Intensity Index Financing long-term care 50 - 2.5 Ensuring continuity of care 32 2.1 Development of community-based services 26 2~3 Extension of professional education 20 2.0 Expansion of needs assessments 18 2.6 Expansion of research 18 2.0 Adequacy of facilities 16 2.0 Ensuring quality of care 15 1.9 Maximizing roles of family members 14 2.3 \ Improvement of public regulation 8 Strengthening coordination mechanisms 8 Expansion of prevention services 7 Extension of public education activities 7 Extension of rehabilitation services Impact of new technologies Rationalization of responsibilities 5 Advancement of public and professional attitudes Enhancement of program management Clarification of ethical issues 6 5 3 2.1 1.9 2.0 2.0 2.0 2.3 2.2 1.8 2.6 2.5 -150-

In carrying out this analysis, an effort was made to evaluate the intensity of the stated concerns as well as their frequency. This task was difficult because most responses were rather brief, usually one or two pages, in line with the approach suggested in Dr. Robbins' letter. Nonetheless, an index of intensity was developed for each comment, taking into account such factors as the length of the comment, the apparent seriousness of concern and the detail of the presentation Ratings were made on a four point scale, with a score of four highest; an average index was calculated for each issue based on the comments with respect to the particular issue. While these ratings are entirely subjective and may often suffer from a lack of information, they may be suggestive of the relative intensity of concern. Excerpts from selected letters submitted by the private organizations are presented in Attachments 2 and 3. The excerpts were chosen to offer insights on the special concerns of individual organizations. Information on on-going studies which appear to be of direct relevance to the Institute's planned study that were identified in the responses are described in Attachment 4. The First Three Issues The three issues identified most frequently in the responses are: - Financing long-term care - Ensuring continuity of care - Development of community-based services. Excerpts from letters discussing these three issues are presented in Attachment 2. The financing of long-term care was identified as a high priority issue by more than 60 percent of the respondents e Most noted shortcomings of Medicare, Medicaid and other existing health care financing programs. The problems of indigent medical care and the roles of state and local governments in supporting long-term care were highlighted in some responses. Long term care insurance was reported as a critical need by quite a few commentators; they urged the development of incentives to encourage the offering and purchase of such coverage on a widespread basis. Continuity of care was the second most frequently identified issue. Concerns were expressed about the lack of comprehensive systems of care, coordinating various levels and types of institutional and non-institutional services. The fragmentation and deficiencies of the current approaches and conditions were often noted. The development of additional community-based services, particularly for persons with chronic disabilities living in their own homes, also received considerable attention. Shortages of organized home health services in some areas and difficulties of access and coordination in others were cited in many instances e Many comments pointed out an urgent need to strengthen these types of services in light of the -151-

increasing demands related to declines in the length of hospital stays and the pressures for deinstitutionalization. Financing issues received the highest overall intensity score among the first three issues. Many respondents discussed their concerns on this subject in relative depth. The development of community-based services also received a comparatively high intensity score. The Next Three Issues Three issues that were also identified rather often are: - Extension of professional education - Refinement of needs assessments - Expansion of research Selected comments on these issues are included in Attachment 3, in which a broad selection of illustrative comments received is presented. The extension of health professional education activities was identified as an essential step to enlarge the cadre of personnel with knowledge and skills in long-term care. Some commentators pointed out that more emphasis should be given to these subjects as part of the basic preparation of health professionals. Others called for more attention to advanced, specialized efforts. Needs assessment approaches were mentioned quite often as a high priority interest. These comments tended to be of two types. Some focused on better estimates of projected aggregate needs and demands for various levels of care and support which are likely to be experienced in the future. Others emphasized better methods of assessing individual needs, particularly with respect to functional abilities, in order to arrange the most appropriate forms of care. Additional research on long-term care was advocated by a substantial number of commentators. In most cases, the focus was on health services research designed to identify ways of improving the organization and delivery of services. In other cases, the expansion of research on the biological, psychological and social aspects of aging and disability was recommended. Among these three issues, the highest average intensity score was for refinement of needs assessments. Respondents commenting on this topic expressed relatively high degrees of concern. The Third Group The third most frequently identified set of issues are: - Adequacy of facilities - Ensuring quality of care - Maximizing roles of family members The adequacy of facilities available to provide services and support to individuals with long-term care needs was reported as a high -152-

priority issue in about a fifth of the responses. A wide range of facilities were mentioned in the comments. They included both specialized health care resources - such as nursing home beds and intermediate care units - as well as more general resources - such as nouslng. Quality of care was of specific concern to many agencies. The appropriateness and effectiveness of existing approaches and measures were questioned. The commentators urged the Institute to give special attention to efforts to strengthen the procedures and capacities for quality control. The contributions of families and other informal caregivers in the provision of long-term care services was emphasized by numerous groups, including both professional associations and consumer groups. They urged that action to enhance the effectiveness and durability of such support be highlighted. The respondents identifying this issue tended to express their interests with a relatively high degree of concern. Other Issues Ten other issues were identified by a smaller number of respondents. Some items addressed particular health care services: - Expansion of prevention services - Extension of rehabilitation services - Impact of new technologies Others were concerned with organization and management topics: - Improvement of public regulation - Strengthening coordination mechanisms - Rationalization of responsibilities - Enhancement of program management Still others were more general: - Extension of public education activities - Advancement of public and professional attitudes - Clarification of ethical issues. The intensity scores for certain issues, such as enhancement of program management and clarification of ethical issues, are relatively high; the few agencies which identified these subjects as priority concerns tended to be strongly committed to addressing them. -153-

Attachment 1 PRIVATE SECTOR ORGANIZATIONS SENT LETTERS AND THOSE RESPONDING WITH WRITTEN COMMENTS Nota Bene: Organizations that responded with written comments are identified by asterisks(*). The American Medical Association and the American Nurses' Association, who provided partial financial support for the planning effort, gave oral comments to the Institute's planning committee. It should be noted here that oral comments also were provided to the committee by the Office of the Assistant Secretary for Planning and Evaluation of the Department of Health and Human Services, the Administration on Aging, and the Veterans Administration, as well as the Health Care Financing Administration and the National Institute on Aging who also provided partial financial support for the planning effort. *Alzheimer's Disease & Related Disorders Assn, Inc. Am Academy of Family Physicians *Am Academy of Neurology *Am Academy of Nursing *Am Academy of Physician Assistants Am Affiliation of Visiting Nurse Associations / Services Sam Assn for Continuity of Care *Am Assn for Counseling and Development Am Assn for Geriatric Psychiatry *Am Assn of Colleges of Nursing Am Assn of Colleges of Osteopathic Med. Am Assn of Homes for the Aging Am Assn on Mental Deficiency *Am Cancer Society Am Coalition of Citizens "/Disabilities *Am College of Health Care Administrators Am College of Physicians *Am Council of the Blind *Am Dental Assn *Am Dietetic Asian *Am Federation for Aging Research Am Federation of Home Health Agencies *AFL/CID *Am Federation of State, County & Municipal Employees Am Foundation for the Blind Am Geriatrics Society, Inc. *Am Group Practice Assn Am Health Care Assn Sam Health Planning Assn *Am Heart Assn -154- *Am *Am *Am *Am Am Am Am *Am *Am *Am *Am *Am *Am *Am Am Am Am *Am *Am *Am *Am Urological Assn, Inc. *Arthritis Foundation Assn of Academic Health Centers *As sn of Am Medical Colleges *Assn of Am Physicians Assn for Gerontology in Higher Edu. *Assn for Retarded Citizens Assn of Schools of Public Health *Assn of State & Territorial Health Officials *As sn of University Programs in Health Administration *Bless Inc. (unsolicited) *Blue Cross and Blue Shield Assn *Brigham & Women's Hosp. (unsolicited) Hospital Assn Lung Assn Medical Care & Review Assn Medical Directors Assn Medical Peer Review Assn Mental Health Counselors Assn Neurological Assn Occupational Therapy Assn Orthopsychiatric Assn Osteopathic Assn Osteopathic Hospital Assn Physical Therapy Assn Podiatry Assn Psychiatric Assn Psychological Assn Public Health Assn Public Welfare Assn Red Cross Soc. of Allied Health Professionals Soc. of Internal Medicine

*Catholic Health Assn of the U.S. Council of State Administrators of Vocational Rehabilitation *Cystic Fibrosis Foundation Family Service Assn of America *Federation of American Hospitals *Forum on Long Term Care The Gerontological Society of America Gray Panthers Group Health Assn of America, Inc. *Health Industry Manufacturers Assn *Health Insurance Assn of America *Home Health Services & Staffing Assn 'Huntington's Disease Foundation of Am. *Institute for Rehabilitation and Disability Management Institute for Research of Rheumatic Diseases *Joint Commission on Accreditation of Hospitals Legal Research and Services for the Elderly Leukemia Society of America *March of Dimes Birth Defects Foundation *Muscular Dystrophy Assn *Natl Alliance for the Mentally Ill Natl Alliance of Senior Citizens Natl Assn of Area Agencies on Aging Natl Assn of Community Health Centers, Inc. *Natl Assn of Counties Natl Assn of County Aging Programs Natl Assn of the Deaf Natl Assn for Hispanic Elderly *Natl Assn for Home Care Nail Assn of Meal Programs Natl Assn of Nutrition and Aging Services Programs *Natl Assn of Private Psychiatric Hosp Natl Assn of Public Hospitals Natl Assn of Rehabilitation Facilities Natl Assn of Retired Federal Employees Natl Assn of Social Workers Natl Assn of State Mental Program Directors -155- *Natl Assn of State Mental Retardation Program Directors Natl Assn of State Units on Aging Natl Caucus and Cntr on Black Aged Natl Citizen's Coalition for Nursing Home Reform Natl Coalition of Hispanic Mental Health and Human Services Orgns *Natl Conf of State Legislatures Natl Consumers League Natl Council of Community Mental Health Cntrs *Natl Council of Senior Citizens *Natl Council on the Aging Natl Dental Assn Natl Foundation for Hospice and Home Care *Natl Geriatrics Society *Natl Governors' Assn Natl Health Council *Natl Health Lawyers Assn *Natl Hispanic Council on Aging *Natl Homecaring Council *Natl Hospice Organization Natl Indian Council on Aging, Inc. Natl Institute on Adult Daycare *Natl League for Nursing *Natl Medical Assn Nail Mental Health Assn Nail Multiple Sclerosis Society Natl Pacific-Asian Resource Center on Aging Natl Senior Citizens Law Center Natl Society for Children and Adults with Autism Older Women's League *Pharmaceutical Manufacturers Assn *Public Cmte on Mental Health, Inc. *Society of Prospective Medicine U.S. Conf of Local Health Officers *U.S. Conference of Mayors *Washington Business Group on Health Western Center for Health Planning Western Gerontological Society

Attachment 2 Excerpts from Selected Letters Concerning the First Three Issues Financing Long Term Care It is unrealistic to expect that the taxpayer can or will be able to pick up the entire cost of the needed expansion of long-term care services. Therefore, the development of viable long-term care insurance programs are essential. - American Academy of Physician Assistants The lack of adequate financing arrangements represents the most significant barrier to receipt of dental care by the indigent, the elderly and disabled population of this country e - American Dental Association Long term care insurance is an idea whose time has come. The Federal government needs to support the private sector in stimulating the development of long-term care insurance. - American Hospital Association ...The current inflexibility of the third party reimbursement systems ... give little assistance to those who are partially disabled and need ambulatory care ... Such schemes should provide incentives to maintain the functional independence of those served. - Arthritis Foundation Technological developments during the next decade will provide new services and treatments for people with chronic illnesses and disabilities. Mechanisms must be developed to assure that everyone has access to these technologies, regardless of their ability to pay. - Cystic Fibrosis Foundation A federal financial commitment to long-term care services is essential because unique demographic and economic conditions often mean that states with the largest number of poor frail elderly individuals have the most constrained resources to meet those needs ... The Institute study (should) synthesize projections and information on the variance in long-term care needs and state and local capacity to meet those needs. National Governors' Association -156-

Ensuring Continuity of Care A key challenge .. is the development of integrated systems of care which dea1 with the various subpopulations needing long-term care. By integrated we are referring to the ... mechanisms which assume continuity of care by addressing the interface between care of various types in one setting as well as the interface between care in one setting and care in another. - American Academy of Nursing ... Increasing vertical integration through the establishment of closer linkages among organizations at related stages of the health care delivery process ... are having and will continue to have a positive effect on the development of continuums of services characterized by continuity of care, the essentials of an adequate long-term care system. - American Hospital Association (A) critical issue is the need to provide a continuum of care. Studies should be directed toward providing long-term care in a variety of settings and at various levels of care. For example, how effective are day programs and respite care in keeping the disabled at home? - American Occupational Therapy Association ... A continuum of care (should) allow for independence in community based settings, such as day care, home care and various housing alternatives that enhance the ability of the older adult to be independent. - Catholic Health Association Health maintenance and preservation systems should be comprehensive enough to include translation of the present fragmentary health care delivery system into a visionary system of encouragement and support of virtual continuums of care that extend from the health implications of independent living and congregate housing through the full array of health and medical care options ... - Federation of American Hospitals High quality of long-term care assumes continuity of care and coordination with other segments of the health care provider network. Unfortunately this assumption is often not justified. - Joint Commission on Accreditation of Hospitals ... We must identify the continuum of services needed to maintain individuals outside of the institutional setting. This issue is not limited to the elderly but is important to the mentally and physically handicapped as well ... It is important to identify the basic services needed to support these individuals within the community ... - National Conference of State Legislatures -151-

Development of Community-based Services (There is) the need for comprehensive, coordinated commNnity-based long-term care, especially home health, hospice and adult day care. - The American Dietetic Association Another area of concern for long-term management is the use of continuous oxygen therapy in the home or at a community site for long-term care. - American Lung Association The necessity for long-term care in some situations could be reduced by investing more initially in the community support systems and in making environmental adaptations to meet individual needs, thereby allowing the person to function more independently. - American Physical Therapy Association ... Alternatives, such as home care, which are cost-effective, should be explored and encouraged. - Health Industry Manufacturers Association Critical issues ... are long-term home care for infants and children with physical disabilities requiring equipment and close medical and nursing supervision, e.g., the ventilator dependent child ... and the effects of discharge from institutions for the mentally disabled to environments which do not provide domiciliary and other supportive services and facilities. - March of Dimes A comprehensive community support system is critical to any serious effort to plan for and meet the long-term care needs of mentally ill... - The National Alliance for the Mentally Ill (There is a need for) models for community based support networks and needs for technical assistance and training ... and how these can be integrated with the more formal services of institutions, social workers and medical professionals. - National Association of Meal Programs ... Preventing unnecessary institutionalization and identifying viable alternatives to institutionalization is crucial to the states. - National Conference of State Legislatures -158-

Attachment 3 Excerpts from Selected Letters Concerning Other Issues Assessments of Needs . . . We hope the Committee en. will adopt the view that all the proposals ... be evaluated first and foremost on whether the individual aged person would not only benefit but will perceive that he or she remains in the maximum control of the decision making. - American Medical Care and Review Association There is need for a more accurate system to classify long-term care patients by functional abilities ... A more accurate system should be used in planning for suitable levels of care and settings in which care is given ... - Joint Commission on Accreditation of Hospitals (An important issue is) the prevalence of abuse, neglect and exploitation of recipients of long-term care and what to do about it - the incidence of this problem is unknown but many professional people believe it is widespread. This is a complex issue requiring attention to the social, legal, health, economic and moral implications. - National Home Caring Council (There is an) insufficiency and inappropriateness of long-term care service options currently available to persons with multiple sclerosis. - National Multiple Sclerosis Society (The Institute should consider) the proportion of chronically mentally ill patients who can be rehabilitated sufficiently to live independently and join the work force ... as opposed to those needing some degree of supervised community housing and a sheltered work environment for the indefinite future. - Bless Inc. Or~anization_and Delivery of Services We tend to equate a health body with a healthy mind ... This is a reaction frequently noted by handicapped individuals of all ages ... This attitude contributes to the unwillingness or perceived inability of individuals to care for disabled family members of all ages. It also encourages care-givers to assume responsibilities for the individual and discourage independence. - American Association for Counseling and Development -159-

Every facet of our current long-term care delivery system needs to be examined. Unless drastic policy changes are implemented, demographic trends threaten to overcome a system already besieged with problems. Currently, accountability, continuity of services, and enforcement greatly suffer in the private long-term care sector. The public sector system is similarly beset with budgetary constraints which limit service delivery. - American Federation of State, County and Municipal Employees Support needs to be given to the family and friends who will be providing the major portion of care ... Studies need to be done on types of leisure activities, and the role they play in replacing employment for the elderly. - The American Occupational Therapy Association (There is) need for further delineation of the role of the physician in providing services to long-term patients and residents. Because of the large number of non-physician providers in long-term care settings, there is a need for a clear delineation of those problems for which there is no substitute for physician care and other health problems which require, at minimum, physician supervision. - American Osteopathic Association We wish to see considered the potential for reducing long-term care needs by improvement in rehabilitation services so that disabled people have a chance to improve residual functional capacity or learn compensatory mechanisms that will minimize functional disability. - American Psychiatric Association An issue of particular interest is the need to demonstrate impact or value of health promotion and disease prevention efforts on the health and long-term medical expenditures and care needs of the elderly. - American Red Cross Maintaining and supporting the involvement of families in meeting the long-term care needs of their family members is a critical issue. - American Society of Internal Medicine Maintenance of effort of the client's informal support system (is) a critical factor in maintaining ill and disabled persons in the community. - Association of State and Territorial Health Officers (A prime issue is the) implications of technology on life expectancy, quality of life and the allocation of resources ... - Catholic Health Association -160-

We still have a very limited empirical basis for making appropriate judgments regarding the configuration and types of long-term care services that various groupings of developmentally disabled persons require; nor do we have a firm grasp of the relationship between intervention strategies and the long-term consequences on the individual's achievement of a productive social role ... - National Association of State Mental Retardation Program Directors Organization and Management There is a seeming lack of understanding of the interrelatedness of the many component parts of long-term care. A change in financing mechanism, availability or eligibility for one component part has significant ramifications for utilization, capacity requirements or intensity of services of another e - American Health Planning Association Currently accountability mechanisms are encumbered with ineffective paperwork which is primarily focused on reimbursement. Accountability which focuses on quality and continuity of care is superficial and primarily administrative. - American Physical Therapy Association What is missing (in the composition of the Institute's planning committee)? Persons with expert knowledge about what actually goes on behind the closed doors of the most widespread existing community support system, viz: the family home ... These missing experts are of two kinds: (1) recovered (mentally ill) patients and (2) their families. - National Alliance for the Mentally Ill The multi-discipline role in long-term care - it seems essential not only to define these roles more clearly ... but also to find ways to alleviate the turf problems which hinder the effectiveness of a comprehensive care plan. - National Home Caring Council In a field with an expanding and explosive development of new services and health care workers ... there must be a consensus on multi-disciplinary roles and responsibilities based on patient/family/significant others needs. - National League for Nursing Increasing needs for nursing home beds ... is more severe in Black communities ... Increasing costs in nursing home care ... causes many middle income patients to divest themselves of their personal assets in order to qualify for Medicaid ... Nursing homes are generally less available and less accessible to minorities. The number and percentage of minorities involved in the ownership, management, and in policy and decision making roles' including task forces, is too small and not representative. - National Medical Association -161-

Attachment 4 Excerpts Referencing Related Ongoing Studies At the request of the Social Security Administration, the APA has recently begun a study which will evaluate aspects of the social security disability process. We see this study as contributing to the stabilization and fairness of a program which provides basic economic underpinning for a large segment of disabled persons who have or will eventually have substantial long-term care needs. American Psychiatric Association - Last year the AUPHA identified the improvement of management of long-term care services a priority responsibility for our ... faculties. It is our assessment that the management capacity in the long-term care sector is a significant constraint upon efforts to improve the quality of services of all kinds . A rmn~rt ; n The project's third year ~ ~ . ... is to include an assessment of present and projected management needs in the long-term care field, available and ~ ~ ~ 1 _ 1 ~ ~ ~ ~ _ _ ll=G"C" mU=~l~lidl ru~uurces co meet chose needs, recommended strategies for expanding the pool of appropriately trained individuals and specific recommendations to government, education and professional bodies. . - Association of University Programs in Health Administration The NMHA has,recently launched a comprehensive project to look at the future of mental health services delivery system ... The two projects have an interrelatedness which might benefit both. This (study) will include issues relating to long-term care of the mentally ill. - National Mental Health Association -162-

EXHIBIT D-2 TOM COMMITTEE TO PLAN A MAJOR STUDY OF NATIONAL LONG-TERM CARE POLICIES Workshop Participants March 12-15, 1985 Key Biscayne, Florida Committee Members Linda H. Aiken,~Ph.D., Chairman Margaret M. Hastings, Ph.De Vice President Executive Director The Robert Wood Johnson Foundation Illinois Commission on Mentan Health Princeton, New Jersey and Developmental Disabilities Kenilworth, Illinois Patricia G. Archbold, R.N.,F.A.A.N. Associate Professor Project Director, Gerontology The Oregon Health Sciences University School of Nursing Portland, Oregon Robert M. Ball, M.A. Senior Consultant to Study Group on Social Security Center for the Study of Welfare Policy Washington, D.C. Rhetaugh G. Dumas, Ph.D.,R.N.,F.A.A.N. Dean and Professor School of Nursing University of Michigan Ann Arbor, Michigan Amasa B. Ford, M.D. Associate Dean for Geriatric Medicine Case Western Reserve University School of Medicine Cleveland, Ohio -163- Susan L. Hughes, D.S.W. Director Program in Gerontological Health Assistant Professor Department of Community Health and Preventive Medicine The Medical School Northwestern University Evanston, Illinois Robert L. Kane, M.D. Dean School of Public Health University of Minnesota Minneapolis, Minnesota Frank B. McGlone, M.D. Private Practice Denver, Colorado William A. Morrill, M.P.A. President Mathematica Policy Research, Inc. Princeton, New Jersey

Alicia H. Munnell Senior Vice President and Director of Research Federal Reserve Bank of Boston Boston, Massachusetts Robert F. Phillips Secretary of Life & Disability Fireman's Fund American Life Insurance Company San Rafael, California Edward R. Pierce, Ph.D., M.P.H. Dean for Allied Health Sciences Associate Dean, Indiana University School of Medicine Division of Allied Health Sciences Indianapolis, Indiana Dorothy P. Rice Professor Aging Health Policy Center University of California Dept. of Social & Behavioral Sciences San Francisco, California Sponsor Liaison Participants Thomas Ault Acting Director for Division of Medicaid & Long Term Care Policy Health Care Financing Administration Washington, D.C. Cynthia Cieplik, R.N., M.S.N. Senior Staff Specialist, Gerontolog, American Nurses' Association Kansas City, Missouri -164- John C. Rother Associate Director Div. of Legislation, Research, and Developmental Services American Association of Retired Persons Washington, DC William J. Scanlon, Ph.D. Co-Director Center for Health Policy Studies Georgetown University Washington, DC John A. Talbott, M.D. Chairman, Department of Psychiatry University of Maryland School of Medicine Baltimore, Maryland Stanley S. Wallack, Ph.D. Director, Health Policy Center Heller School Brandeis University Waltham, Massachusetts Ellen B. Sachs Project Coordinator American Medical Association Chicago, Illinois

Invited Participants Mrs. Mercia Decker Director, Services Development and Acting Director, Education & Training Office of Program Development Administration of Aging Washington, D.C. George Greenberg, Ph.D. Senior Program Analyst Office of Assistant Secretary for Planning and Evaluation Washington, D.C. Institute of Medic cine Staff William A. Lybrand, Ph.D. Principal Staff Officer Leopold G. Selker, Ph.D. NRC Fellow-In-Residence H. Don Tiller Senior Secretary John H. Mather, M.D. Assistant Chief Medical Director for Geriatrics and Extended Care Veterans Administration Washington, D.C . Mary O. Mundinger, Dr. P. He Associate Professor, Director Graduate Program, School of Nursing Columbia University New York, New York (1984-85 Robert Wood Johnson Health Policy Fellow) Sandra Newman, Ph.D. Associate Professor and Principal Research Scientist Johns Hopkins University Baltimore, Maryland (Representing Committee Member Raymond J. Struyk, Ph.D.) Karl Yordy, M.A. Director, Division of Health Care Services Kathleen Drennan Research Assistant -165-

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